What It's Like to Feel Abandoned While You're Still Sick

Even after my long inpatient hospital stays, I still sometimes feel as though I’m in the same hospital bed I’d just been discharged from. I had surgery for inflammatory bowel disease that was quite extensive and complicated, which resulted in long inpatient stays, months at a time.

Oftentimes I still feel trapped in that hospital bed, where I may as well have been glued to its surface. Watching bad TV, paging the nurse so I could stand up and go to the bathroom, taking medication or changing the dressing on my wound. Friends and family visiting. Life going on without me taking an active role in it.

At first, friends visited. They suited up in yellow isolation gowns and nitrile gloves so they could be in the same room as me at 21. I was living, breathing proof that not all 20-somethings were invincible. Then, during my second long-term stay, I had a panic attack in front of my two close friends while they were visiting. They left the hospital crying. That was the last time they visited. There was a certain look in the eyes of a friend who would not be returning to the hospital, who would not be likely of returning to your life, after all this was over. An absent but sympathetic look that acknowledged saying goodbye would be too painful.

Meanwhile, even out of the hospital, I just kept wondering when the doctors would finally fix me. It took me a long time to accept I was not fully “fixable.” They can take out your colon, but it’s harder to put back in, so that wasn’t really an option. I don’t know what’s been harder, the loss of my healthy self or the loss of my relationships. It physically hurts to experience so much loss. The surgeries and complications were painful, but emotionally — it felt impossible. I used to pace around that tiny, single hospital room, IV pole in arm, crying in different places, wailing in different volumes, sobbing silently to myself, whispering, “I want my Mom… I want to go home…” I until I fell asleep.

My mom, my aunt, my friends, all the men and women who left that room and never came back, I miss them every day. Sometimes I think that’s OK, of course I miss them. They miss me too, we’ve all endured so many changes, it’s hard to know just exactly how we fit together anymore. Other times it feels like a waste of energy — missing them — but I just can’t lie to my heart and tell myself I don’t care. Of course, I care! So much so that it makes me ill. Hurts my stomach. Increases my pain. Deprives me of sleep. It hurts so much to be so alone. But ignoring the pain doesn’t make it go away. So, I’m trying to face it. Regardless of what anyone else says, the only way out of the woods is through the woods — in my experience.

Despite the full decade it’s been since my life changed forever, I still struggle with these challenges daily. I question my purpose if I cannot work full-time. I question my role in my family since my healthy self now only makes an appearance about half the time we get together.

In my life, I saw most friends check out emotionally within the first year of the chronic pain diagnosis, two to three years after my final surgery. I’m still shocked at the lack of empathy and compassion from the people I once considered my closest friends and family members. It is as though people give you a timeline for grief, for illness, and if you’re not “better” by that time, you missed your deadline for support. It’s as though people got sick of me being sick. Where there was once patience and kindness, there was now frustration, anger, resentment.

Friends called me flakey, told me I was faking, that if I wanted to get better I could and would get better. I just wasn’t trying hard enough. My heart broke for every lost opportunity, every lost relationship, every ill-conceived piece of advice or guidance. Even as I’m writing this my eyes are welling up. Chronic illness changes everything, and when it feels like your loved ones are giving up on you, it becomes really tempting to give up on yourself.

It didn’t seem fair that my struggle was met with impatience. I’m impatient with it too. Could no one else see that?

In my chronic pain support group, I likened this steady loss of support to still being stuck in that hospital room, watching people come and go, knowing most of them would never come back. And for the rest of the day, I’d be in my room alone. Depressed, ill and hopeless.

My support system still exists and the people who really matter are still there, but it doesn’t change the fact that it’s a fraction of what it used to be. Most days I can carry on and be grateful for everything I do have, but other days I grieve. I grieve my best friends, my closest family members. I grieve the laughter and the dancing and the life without pain. I grieve my healthy self. And when I’m tempted to seek comfort in ways I used to, like reaching out to a friend in the middle of the night, my heart sinks even deeper into my stomach. Because there’s no one left to call.

They all gave up and moved on years ago, while I’m still here, reeling.

I call this feeling abandonedness.

It’s lonelier and more hopeless than loneliness. It hardly seems fair that they
get to decide to move on without me while I’m still feeling stuck in that hospital bed, still hoping for a full recovery, just waiting to get my life back. If they could have just paused — waited until I got better, maybe we’d be at the same place in our lives right now. I would have a degree, a career, a marriage, a child or two, and we would all still be friends. But I took too long. They couldn’t wait any longer. They wished me well and moved on.

On my darkest days, I feel abandoned. On my best days, I feel so fortunate and so grateful to be alive. I don’t mean to make it sound like I’m in a never-ending pit of despair, but I am in a place right now where I’m focusing on facing my grief head-on and letting it all out. All those unfelt emotions that have built up, now come crashing down and I’m not sure I’ll ever be whole again. Those days hurt. They’re devoted to feeling the pain and going through it. So, I counteract them with days I fight back tears and try hard not to think about the loss and abandonedness. And on my average days, I feel confused as to what my life should look like now.

I’m 31 now and still have a long “to-do” list (most of it was composed before
the onset of my chronic illness) with unchecked boxes. I continue to struggle with my relationships, but I have hope. I really do. I just think I didn’t survive all that medical trauma for nothing, and that one day things will fall into place — as long as I keep trying. And the biggest silver lining about pain and suffering is that you appreciate the good times so much more. You can even be grateful that the past happened, that at one point you were fortunate enough to have such an outpouring of support, even though that may be over now.

I don’t think abandonedness is unique to me. For my peers with chronic illness and conditions, this is a common phenomenon, but it doesn’t make it any less painful. It doesn’t feel any less personal. I experience it uniquely in that I feel as powerless as I felt on that hospital bed all those years ago, that all I can do is watch people come and go, even as I beg them not to leave me. I try to find any silver lining I can when it comes to losing meaningful relationships. They will make you appreciate the good, you’ll love your sisters, brothers, cousins, dog, even more than you thought possible. You still have love to give and there are people out there who deserve to receive it!

I also think the perfect antidote for abandonedness and hopelessness is gratitude. Be grateful you made it home safely from that 20 mile drive from work, be grateful for heat, blankets, candles, coffee. Anything simple or abstract that brings you just a little light in your heart, count it. Write it down, be grateful. Though I’ve only had a gratitude jar for two years and I’ve only just begun my courageous battle with my seemingly insurmountable grief, I do know that abandonedness is not a permanent feeling. Though it can feel incredibly isolating and weigh on an individual quite heavily, it is not synonymous with being alone or feeling lonely forever.

I’ll close with two of my favorite anonymous inspirational quotes (from pages I
follow on Instagram):

“One day you will learn that this loneliness was protecting you from the wrong people.”

“I didn’t come this far, only to come this far.”